My son became unwell slowly. We couldn’t pin the problem down. It was pain in his stomach. It was tightness in his chest. It was suddenly waking and gasping for breath…or in the middle of a seemingly normal moment. We had ambulances and late night drives to the emergency departments. It became so frequent we felt we should spread ourselves around the various hospitals. We became known by the doctors and ambulance drivers. Yet nothing helped.
Many gaps in his school attendance led the teachers to believe the problem was school avoidance. Three x-rays taken at intervals during 2014 showed impacted bowels. The local doctor printed out an information sheet on constipation and instructed to take laxatives for a week. This was no help.
One day he couldn’t sit up in bed. He could barely walk. His pain made him groan all day until sleep took over and he fell silent. We stepped up to Paediatricians. My son shuffled slowly into their offices and lay down on the clinic bed during consultations.
To sit up was too painful….I had to pull him up off his back, pull him out of bed…out of chairs and the car. I supervised him showering, dressed him and put his shoes on.
The school phoned the paediatrician.
School : “There has been a long history of school avoidance…you’ll have to get to the bottom of this.”
Paediatrician: “I’m sending him to the psyche team for an assessment.”
Psyche team to my son….”Mate…you can go back to bed….you’re clearly in a lot of pain.”
Psyche team to me: We won’t be following this up. It’s clearly a physical issue, not a mental one.”
Paediatrician to my son…”I think you can go back to school now.”
Me to Paediatrician…”Are you kidding? How can he go to school…he can hardly walk….he’s in extreme pain…and what about the bowel accidents?”
Paediatrician to me….”Let’s be positive….maybe you’re putting too many hopes and dreams onto him.” This was no help.
My son could walk no further than fifteen metres. When he did he shuffled his feet, body bent forward, holding his stomach with his hand. My eighty one year father on one side, myself on the other….holding his arms to support his weight. He lost control of his bladder, waking on freezing mornings shivering and saturated. The laxatives didn’t help. He had random bowel accidents then nothing for up to fourteen days.
“I hate my life” he would say. But then he would make me laugh until I thought I would wet my pants. His sense of humour was the only thing that carried us through the darkness. Laughter and love.
Enemas became the only source of small relief. Yet still he was breathless.
Hospital staff: “It must be the pressure of the bowel on his lungs.”
Me: “Is there anything you can do to help?”
Hospital staff: “No….impacted bowels take a long time to clear.”
We found another paediatrician. I had to drop my son at the closest point to the office, help him out of the car and leave him while I went to park. Strangers came from everywhere to offer help.
“Can I help you?”
“Can I wait with your son while you park?”
“Can I carry something for you?”
He had to climb two flights of stairs to the Paediatricians office. It took him half an hour….step by step…tears rolling down his cheeks.
Random thoughts to school:
‘Please stop demanding to know why my son is not at school. Please don’t waste precious time misleading Paediatrician’s by assuming this is school avoidance. Please accept the constant flow of Drs Certificates I provide are proof he is unwell. Please do not block my application to give my son access to Distance Education. Please send a Get Well card from the kids in his home group. Please show some compassion. Please help me.’
My son missed eighteen months of school. He is just out of a wheelchair. His pain has decreased to a level he can live with but his bowels are still as slow as once a week, if he’s lucky. He is deconditioned to the point he can’t walk up steps or get himself up off the ground. He has trouble engaging his leg muscles, his knee is bent from a contracture and tight hamstrings and he lurches as he walks. He is rehabilitating back to school.
I spoke to a lady from the Education Department.
“My son is leaving Distance Education and returning to school.”
“Oh really? Well that is a positive outcome isn’t it.”
“Yes, it was always our intention for him to return to school when he was well enough. He is a bright boy, he loves learning…he wants to become a surgeon or a pilot one day….if he can learn to walk without a limp
“Yes…but he could have used his illness to avoid school and stay at home.”
“No….returning to school was always our aim.”
We have stopped going to the local doctor who ignored the three x-rays taken in 2014. If the condition had been treated correctly, earlier on, all this could have been avoided. We have learnt that you have to help yourself in this world and help comes from unexpected sources. Like the beautiful strangers on the streets of Sydney….thank you for your help and kindness.